6 month update

6 months ago today I had my head sawed open and a tumor the size of my first thumb joint removed.

6 months later, I spent the weekend before my half-craniversary at a music festival where I worked my way up to the rail for a heavy metal show.

Yeah, I think my recovery is coming along quite nicely.

One of my biggest fears prior to surgery is that I wouldn't be me anymore. That my tastes and attitudes would change. And then not really knowing what parts of the brain the surgery would affect, what if I couldn't listen to loud music anymore? I've never been big on crowds but have figured out coping mechanisms that allow me to go to Bonnaroo and handle being in the middle of 80,000 people.

What if they didn't work anymore? What if I got severe anxiety being around more than 10 people at a time? That really was what freaked me out more than the whole open-skull dealio.

And yeah, in the first few weeks after my surgery, I did get overwhelmed very easily. Being at my sister's house right before my niece's bedtime with Emerson running around like a spaz, the dogs barking, Karl listening to music in the kitchen and some kid show on the TV - waaaaay too much. But that all went away without me really noticing it. My first few concerts, I stayed at the fringes of the crowd, but I went to two shows the first week of July and anxiety didn't even cross my mind. I pushed my way up front for The Chris Robinson Brotherhood and happily lounged in the middle of the lawn for Further.

I did have some worries about Forecastle this past weekend, but decided that I would just handle it the way I did my first Bonnaroo. Keep breathing, look up to the sky when the crowds get to be too much and concentrate on the music. And it worked. I had an amazing time, saw some of the best shows of my life, smiled so much my cheeks hurt the next day, danced so much my feet still hurt.

And, yeah, I was up front for Beats Antique and Galactic

In the pit for My Morning Jacket

  In the pit - and then on the rail - for Clutch

All of which I took one moment at a time. How am I being this close? Can I get closer? What if I'm up close but outside the speakers? And now what if I'm on the outside of the pit? Or right inside? And so on. I also balanced all of this with sitting at the back of the crowds or in the VIP section (we got upgraded for free due to some confusion with our MMJ fan club passes).

I saved my energy for the shows that mattered and enjoyed every minute of the weekend. My legs are not back up to full strength, but they're super close. And my endurance could use a little work. But I was never that far behind my ridiculously long-legged 6'4" brother-in-law and danced nearly as much as my sister so I know that it won't be much longer before I'm fully back to my pre-surgery self.

Overall, it was the perfect celebration of life.

Sheryl Crow's meningioma

Yesterday, a friend sent me an article about how Sheryl Crow has a meningioma. Apparently it was discovered back in November when she was forgetting lyrics to her songs. Lucky for her, hers does not need to be removed right now. And since meningiomas are such slow-growing tumors, there's a chance that she may never need surgery, which would be a fantastic outcome. I'm very happy for her.

What I'm not happy about is how she's wording her public responses about benign tumors.

"it's benign, so I don't have to worry about it"

source

Benign means non-cancerous and usually when you refer to a situation as benign, it means unharmful. But a benign tumor isn't always unharmful. Any odd growth of cells can cause harm, especially if they crop up in a dangerous location.

I consider myself very lucky that my tumor was caught while still relatively small and that it was in a relatively non-dangerous location and my only problems were ice-pick-jab headaches and not being able to move my leg for a few weeks. Others aren't so lucky and lose their eyesight, the ability to be in  crowds due to overstimulation or have complete paralysis. Some people even die from benign brain tumors. And then, of course, there are the benign tumors that develop in other parts of the body and the issues they can cause.

Benign tumors are definitely something to worry about.

"please don't worry about my "brain tumor", it's a non-cancerous growth. I know some folks can have problems with this kind of thing, but I want to assure everyone I'm OK"

source

"Some folks can have problems." To this meningioma-survivor, that sounds a heck of a lot like "sorry you were offended" instead of "sorry I offended you." Maybe I'm being sensitive, but she's a very vocal person. I'm sure she's had media trainings in the past and I'm sure she has a PR rep who told her to make that second statement on her Facebook page. Couldn't she - or one of her people - have realized that with some simple rewording, she could have not offended all of those affected by benign tumors?

"please don't worry about my brain tumor. While benign (non-cancerous) tumors can cause serious problems, I want to assure everyone I'm OK"

my words

See? How hard is that? And really, getting rid of the belittling quotes around brain tumor would've gone a long way without rewording the second sentence.

She learned of her tumor right around the time I learned of mine and I'm sure she did exactly what I did - hit the internet. And in doing so, found all the scary stories and worst-case scenarios. But then she calmed down and realized that hers didn't need surgery and wasn't causing any immediate problems so she got on with her life. Maybe was even able to put it out of her mind. She already talks about breast cancer in just about every interview, I can totally understand why she wouldn't want to add another medical condition to the list. And seems like even mentioning it now was a total slip. Also fine. If she doesn't want to be a meningioma advocate, she doesn't need to be. She's more than her medical conditions. I also totally understand wanting to downplay the seriousness of it - people freak out when you put the words brain and tumor together. And having a benign tumor is definitely worlds better than a cancerous one. Worlds.

But she is in the public eye and thus what she says - and how she says it - means more than it does for the average person.

Brain Surgery Live Tweet

Okay, I think this is pretty darn cool. A surgeon in Texas tweeted live during brain surgery.

http://storify.com/memorialhermann/brain-surgery-live-on-twitter

The first page is just prep for surgery so nothing gory, but beware the second page if you're eating lunch or otherwise squeamish. And there are videos as well as pictures. Videos with sound so you can hear the drills. Glad I was knocked out for that part.

But it's still cool to see because I went through basically the same procedure.

no scarf!

I went without a scarf today to work - my first full day sans scarf. It's pretty darn exciting.

Yeah, I kinda suck at figuring out a smile for self-portraits. I don't really smirk like this in real life. At least I hope I don't. But I almost always do it in my self-portraits.

I desperately need to get my hair cut and have an appointment for tomorrow, but I just couldn't face another day with something on my head. So even with all its puffy-Prince Valiantness, I did it.

Here's my goofy self-portrait smile. I think I look like a chipmunk, which is why I do the smirk. It may be weird, but it's not as chipmunky. My normal smile is not chipmunky.

I did pull the left side back with a barrette, which helps with the puffiness. And I sprayed the heck out of my hair so my comb-over won't un-over.

But you have to really be looking straight down at my head to notice something odd. And even then, you'd just think I had kinda sparse hair. Or maybe that your eyes were playing tricks on you. Exactly what I was hoping for.

I don't know how boys run around with baseball caps on 24/7. My head would always get itchy by the end of the day and I would dread having after-work plans where I had to keep the scarf on. And a hat? Ugh. I had a beret-type hat that was fine in the winter, but then I got a fedora for spring and it was just sweat-city.

So, yeah, this is pretty kickass. No scarf, sunny day, non-itchy head. I'm a happy girl.

May is Brain Tumor Awareness Month

Did you know this? I kinda did from going to various websites and research and boards and such, but overall it's such a non-event. There is a race this Sunday in DC and I've seen it advertised on TV, but I'm not participating and have no desire to do so. I'm perfectly happy to fast forward through that commercial.

Part of it is that I don't want my tumor (or lack of tumor!) to define me. My mom was frustrated that I didn't want to celebrate having had the tumor removed once I was back up to speed. But I was back up to speed, I didn't want to be reminded of when I was stuck on the couch. I probably won't want to celebrate my 1 year anniversary either. Celebrating a successful surgery is also a reminder of having needed to have the surgery in the first place. Too much bad mixed up with my good.

But then I feel guilty for not being more involved in brain tumor awareness. Here I was, a young, healthy person who randomly found a tumor in her brain. And since no one knows how meningiomas come about, even the tumor was random. If I got one, anyone could. And if more people knew that meningiomas exist and more doctors knew to look for them, then more people would have successful outcomes. I was very lucky, others aren't. I should help those who aren't. Right? I know this, I do this for my job for so many other issues but I just can't drum up the desire to do it for the issue that actually affects me. And it's not just the brain tumor. There are other causes out there that personally affect me that I have a hard time publicly supporting - so much so that I'm not going to list them here. If I can do it as a "let's band together and support this concept in general" sort of way, then I'm on board. If I have to call myself out as someone affected, I'm completely mute. I also have a hard time talking about difficult subjects without crying and I hate crying.

That's just it. I don't like looking weak. I don't like drawing attention to my flaws, no matter how unresponsible I am for them. Especially if they're ones that can't be fixed. Even though my tumor was successfully, completely removed, there will always be the chance that it'll grow back. That chance will always be higher than someone who never had a tumor.

And that's also why I'm frustrated with my slow hair growth and why I'm quick to tell people that I'm back to 100% even though my leg does still bother me. When I list the ingredients of what makes the perfect Debbie cake, I just don't want meningioma to be on that list. Sucks.

official all-clear

I got the official all-clear from my doctor last week! Wahoo! I was preeeeetty sure that I didn't see anything, but there were a few white lines that could've kinda maybe sorta been something. But nope, I'm all good.

Forgot to point out before, but did you notice that there's no empty space where the tumor used to be? Crazy how my brain just bounced back. I never saw my CT scan, but I wonder if it was immediate? The tumor was pressing into my brain, squishing things onto itself, so to me it makes sense that it would have just re-expanded. So would that be like memory foam or unlike memory foam? Or maybe a rubber ball is a better metaphor. My brain as a rubber ball. A stress ball.

Right? I crack myself up.

My hair is growing back. The hair on most of my head is a normal length, but the area right around my scar is still struggling. I *this close* to being able to do a comb-over or other hair-trickery and it will be nice to not wear a scarf every day. Though I've gotten much better at quickly selecting a scarf to go with my outfit. At first it took me SO long and I was late for work every day. Now the scarf selection takes just a minute or two, same as deciding on any other accessory.

follow-up MRI - looking good!

I had my follow-up MRI yesterday. Total wreck of nerves all day. My sister went with me to be my backup driver in case I was woozy from the contrast (I wasn't) and was a total sport when I said that we needed to leave my office at 4:30pm. My appointment was at 6:30pm and I had to be in the waiting room by 5:45pm. But here's my rationale for why it could take over an hour to drive up the street:

The hospital is only 1.15 miles away from my office, but it's up Wisconsin Ave on the edge of rush hour. If you know DC traffic, especially Georgetown traffic, you know that it can take 30 minutes to drive those 7 blocks before you turn down Reservoir.

And then we know that the later in the day it is, the more difficult parking can be - the garages are quite small. But we lucked out - we did have to go to another garage, but there was a spot right near the entrance.

And then I had to get to the CCC Building, which is, like, waaaaaay in the back of the hospital complex. One starts singing "over the river and through the woods" going down hallway after hallway. But then since Alison has gone in and out of the hospital so many times, she knew exactly where to go.

So, yeah, we were all checked in by 5pm. And then they didn't call me back until 6:45pm. And then we had to go to the other MRI location (over the river and through the woods again). And then wait for them to be really ready for me. And then the MRI took 45 minutes (standard length of time). And then I had to wait another 5-10 minutes for the tech to make a CD of my images. It was 8pm by the time we go out of the hospital. My sister didn't complain once. At least not to me.

Plus, we got to see the images of my brain over dinner! And seeing my gray matter all gray, no glowing white mass, was worth the 3 hour wait. Though next time I'll budget our time better :)

Pictures are after the jump. For each set, the top picture is from my November MRI and the second picture is from yesterday. I tried to get as close to the same view as possible. Look for my titanium pins and the choppiness of my skull and faux-derma. It's pretty cool.

To my untrained eye, it certainly looks like nothing is there. I am meeting with my neursurgeon on the 9th for his trained-eye opinion and I'll update again after that!